Craniotomy Part III: Recovery and Release

It is now two weeks since my surgery. This is part four of a set of posts I’ve written covering my experience. We left off at the conclusion of the procedure in the operating room.

I must say that the time since has been rather anti-climactic. We were well prepared by my surgeon, Dr. F, to expect and not be alarmed by some motor or sensory deficits that may result from the surgery, or even just from swelling during recovery. We were prepared that because of the location of the tumour, near the motor cortex, this could also involve risk of motor deficits that would require rehabilitation or impairments that could remain. I can report nothing. No side effects, no seizures. Minor motor seizures were one of the symptoms of my tumour, which brought me to the doctor four years ago. They have been controlled for three years with anti-convulsant medication, which I am still on, so perhaps that helped control any seizure activity that would have resulted from surgery. I have also been on a low dose of dexamethasone since surgery, to reduce any swelling, and also because it is anticipated that radiation treatment will be required.

I was awake and aware when they took me from the operating room into the recovery area. They had a backup on beds in the neuro ward that day, so instead of spending an hour in the recovery area, I was there for seven hours. I didn’t mind, I made a nice friend in a woman next to me who was also waiting for a bed in an observation room. The recovery nursing staff were generous in letting my family pop in for a few minutes at a time, although that’s not typically allowed in recovery. I was moved to a bed on the ward that evening, and slotted for a CT scan the next morning. I felt good, I was given IV morphine for pain, but only rated it 4 to 5 for headache and incision pain. I felt chatty and sort of euphoric. That probably equals – good drugs.

The next morning, I was back on solid food for breakfast and up out of bed to the washroom. I sneaked in some private washroom yoga, they have big bathrooms in those rooms. I couldn’t believe that I felt so normal, my balance was good, I didn’t feel different at all. I was getting Tylenol every six hours, and morphine three times that day. Morning rounds with the neurosurgery team were quick. “Are you sure you had a craniotomy yesterday?” was the key question. My CT looked good, no worrisome swelling or fluid buildup. I was told I would get an MRI the next day. That first day after surgery was a whirlwind. I had visitors, and appointments with physiotherapy, occupational therapy and speech pathology. The physio and occupational assessments were easy, we walked the hall and stairs and I was given a pass. A very nice young girl popped her head around my curtain in the afternoon and said “I’m from speech pathology; I’ve been listening to you visit for a few minutes, you used the word “machinations”. I don’t think I need to do an assessment”. For once my motor mouth and loud voice (I like to say I project) were working in my favour.

I was cleared to move out of the observation room by early the morning after surgery, and made it onto a regular ward bed by the end of that day, where I had a terrific sleep. On the morning of day two, a neuro team member came to see me and said that if today’s MRI results looked good, I would break the record for release from the hospital after a craniotomy. I got my MRI in mid-morning, and my rockstar surgeon, Dr. F, popped by in early afternoon. He took me and my husband to an office to show us the MRI results. The report showed “some tumour cell residue” on the contrast dye scan, he estimated he got 90% or more of the tumour out, excellent for a resection of this sort. He reiterated that given how well I was doing, it would be up to the oncology team to recommend next steps, but a combo of chemo and radiation would be well timed.

I was released from the hospital a little over 48 hours after the surgery was finished, having been on nothing but extra strength Tylenol for 18 hours. I did not feel that sitting in a hospital bed eating their Tylenol justified staying, and was gratified that my surgeon oversaw my discharge paperwork himself, ensuring it went fast. It was a Friday, I was glad not to be stuck in the discharge machinery over the weekend. I won’t lie, the first night home, when I laid down in bed, I was a little afraid, like “don’t I need a call button, a nurse, a monitor….??”

Since then, I’ve followed orders. I’ve rested, eaten well, read, watched Netflix. I’ve had some fatigue, I’ve had a couple of times where I feel some numbness in the last three fingers of my right hand, which passes. I’ve not taken any Tylenol in the past week. I have had a lighter, less headachey head than I think I’ve had in a few years. Maybe that’s the dex. Or the missing tumour. I’ll take it, in any case. I imagine that some of the small motor symptoms I’d been experiencing over the past six months have improved, but these are diaphanous observations that can easily be manufactured when “listening in” too closely to the body, like reverse hypochondria.

Day ten. Coffee date.

Last Friday, Dr. F called with final pathology results. The tumour had indeed advanced, from what was classified three years ago as a grade II mixed oligoastrocytoma to what is now a grade III anaplastic oligodendroglioma. Over the next week, I’ll see my medical and radiation oncologists and look at a plan for next steps. I’m ready for that.

My mom and my husband told me that when Dr. F met with them while I was in recovery, to speak to them about the surgery, he called me “the bravest most well prepared patient I’ve ever had”. No false modesty here. I respect him, and I take that as a high compliment.

Added Oct 2, 2015 – here is a link to an interview with CBC Saskatoon on my diagnosis and surgery, live in studio from Oct 1.

What an incedible journey! Your strength, courage, and determination is amazing. (You also TOTALLY ROCK a shaved head! So beutiful.) Thank you for chronicalling your experiences. So inspirational. Also very glad to learn you are doing well with your recovery!!!

Thanks so much for writing down your experience for people, truly fascinating to read….You are a true survivor and inspiror (such a word?) – looking forward to reading more from you and hearing about your healing path.

Stumbled on your site researching Keto. Your bravery and willingness to share are a testament to the type of person you are. Strong, giving and compassionate. I wish to you and your loved ones continued strength and comfort to endure this. You have my sincere well wishes for any and all positive outcomes.

My 28 year old daughter is going through this right now. We go see her oncologist this Tuesday about recurrence that showed on her MRI. Her surgery was a year ago very similar to yours. I will definitely ask about the Keto diet. Thanks for all the information. I’m sending healing thoughts and prayers.

A mate’s daughter was diagnosed with a glioma in early October. She is recovering post surgery and we are looking at Keto, etc as adjunctive therapies to help her through radiation and chemotherapy. She has a Grade II diffuse astrocytoma, which has properties of aggression which can respond to oncologist. Thanks for your blog.